I'm a new member, first-time poster, really happy to have found this forum. I'm posting with concerns that I may be developing early signs of myelopathy, and while I've done my due diligence so far getting opinions from specialists, I haven't spoken to anyone who's had myelopathy and/or severe radiculopathy themselves. Hopefully I can get some input here.
As background, I'm 30, no health problems, herniated a disc at C5/C6 1.5 years ago. The disc was large and mildly compressed the left spinal cord, but conservative management was advised. I had pain radiating down the left arm that resolved after 4 months, and I had weakness in the left biceps and left shoulder that developed 2 months after the injury, partially improved over the next month or two, and then stabilized.
Fast forward to over a year after the injury (about two months ago), and I began noticing new symptoms that were a lot more alarming to me. First were the hand symptoms: my left wrist, left hand, and left fingers seemed weaker. Using my left hand became a lot more awkward, which was odd because I'm left-handed. Pinching strength with my left thumb and forefinger was significantly worse than it had been a couple months before (I had the PT check, and my left hand pinching strength had gone down by 50% over 4 months). The fingers in my left hand seemed to be curling inward more than before. My fingers in my left hand feel weaker than those in my right when I type. I haven't noticed any changes in my handwriting, though, or in my ability to open jars or button shirts.
Three and a half weeks ago, hyperreflexia was detected in my knees bilaterally on physical exam--I've never had this before, and in fact, it was absent just one week prior at a PCP checkup. A few mornings later, I woke up and noticed that my gait was significantly different than before--I felt unsteady and had tension in my legs, particularly in my knees.
Since that time, the symptoms in my legs have not resolved. My knees feel wobbly at times, and the rest of the time the tension is significant--when I try to flex my knees, it almost feels like there is a rubber band inside the leg resisting the action. Oddly, the tension is greater in the left leg than the right, which isn't very consistent with upper motor neuron damage at the level of the left cervical spinal cord.
I can still run. Walking slowly, standing, and making mild adjustments in leg position are most difficult. I feel as though I'm going to fall.
At night and when I drive, my legs occasionally jerk around, and my legs never feel loose and relaxed when I lie down anymore.
In terms of sensory changes, I can't appreciate cold in my feet anymore--everything feels like the same dull temperature. I have a similar thing going on in my hands and forearms bilaterally, but it's not as bothersome. I guess these sensory changes could all just be due to peripheral neuropathy, but I'm not diabetic, and recent EMG/NCS was entirely normal.
In terms of workup...recent MRI of c-spine showed the disc has gotten SMALLER. This is what has docs scratching their heads. The report states borderline compression of the anterior cord at C5/C6, as well as a mild/moderate disc bulge at C6/C7. Brain and thoracic MRI are normal. SSEP was normal, consistent with my suspicion that if there is anything going on, it is affecting the anterior spinal cord only.
Do my symptoms sounds like early myelopathy, or am I being overly concerned?? My fear is that there is some dynamic compression of the spine with certain movements (e.g. flexion, extension, certain sleeping positions) that is not being captured on MRI.
I apologize for the long and detailed post, but I think I might get good insight on here. As a pretty diligent observer, I've been underwhelmed by how quickly docs give up when symptoms are borderline or the standard imaging studies are unrevealing. I don't want to wait until I lose my ability to run, walk into the doc's office, write, or work before something gets done.
Last edited by moderator2; 06-26-2012 at 06:48 PM.
You've really got me puzzled, and casting around for off the wall causes. Iron deficiency? I guess the other symptoms would make that pretty obvious.
The best I can come up with is cord damage, possibly combined with left C6 radiculopathy. I would think your gait problems and hyperreflexivity would have the other docs scrambling. Has anyone suggested taking out the C5-6 just because of your symptoms, even if the MRI does not seem to justify doing so?
As for the effects of flexion/extension of the c-spine, surely you can test that yourself?
Last edited by moderator2; 06-26-2012 at 06:50 PM.
WebDozer, thanks so much for responding. My blood levels for B12 and so forth were ok...I didn't really think of iron deficiency and don't think that was checked.
Surgery is an option, and I do worry EVERY DAY that there is compression that the MRI is just not showing--but I guess I'm uncomfortable pursuing that route just yet? I would love to have some diagnostic data (imaging, maybe a good neurologist's opinion) to back up my decision. One surgeon down in LA told me I probably do have early myelopathy and should consider surgery, but he didn't order additional tests to clarify the diagnosis, and I feel a little uneasy about hastily following his advice.
Another up in NorCal told me my neck looks way too good on MRI to be accounting for my symptoms. This seems to be the general consensus. AP diameter at C5/C6 is 10 mm. The disc is there, but the CSF around the spine looks patent.
I'm getting flexion/extension xrays done tomorrow, and I'm seeing a spine neurologist Thursday. The weird muscle twitches in my legs continue and I have some lower extremity fatigue with standing, but my gait seems better.
Someone up north told me that my arms seem too intact to be consistent with cervical myelopathy--I don't have hyperreflexia in the arms, and my arm weakness, although it's there, isn't that terrible. But based on what I've read, hyperreflexia in the knees is one of the very first signs of myelopathy, so I'm confused. Any thoughts??
Last edited by cspinehelp; 06-27-2012 at 12:49 AM.
Iron deficiency - I only came up with that because some of your symptoms constitute RLS, which could be caused by myelopathy, but also by iron deficiency (too much bleeding, or maybe insufficient uptake?).
Cord damage - It's my understanding that cords can sustain rather extreme compression asymptomatically if it happens gradually enough. Last year, my cord was down to below 5mm, but was asymptomatic up until just before my MRI. I wonder if it's possible that the converse is true, that apparently minor cord compression can cause damage if it occurs suddenly (which is what happened to you?).
My guess is that you have two problems, one of which is cord damage, and the other who knows what. From all my reading, I have to say that I'm losing faith in the reliability of MRI's to indicate nerve damage. I think that doctors recognize there's often less damage than meets the eye, but I think they've been slower to recognize that there may also be more.
I certainly don't mind you bouncing ideas off me, but I'm sure you realize you know a lot more about all this than I do. There's one or two other posters here who might do better than me.
If you're going down to LA, there's plenty of high-quality spine surgeons and neurologists there. I'd recommend Hyun Bae in Santa Monica, if you want to talk to a very good surgeon with a reputation (as far as I know) for honesty.
One last thought... have you had multiple radiologists look at these images, and are the neurologists and/or neurosurgeons also looking at the images and not just the reports?